What I’ve Learned So Far in the First Six Weeks About Having a Baby with Down Syndrome

I have been very surprised at how our first six weeks have been in regards to having a newborn with Down syndrome.  It was not what I had imagined in my mind.  Here are ten things I’ve come to realize in the past six weeks.

1. My baby is just like any newborn. – Geneva has been no different than either of my first two children, she sleeps, eats, poops, and grows every day.

2. All the crap you read about may not actually happen. – I thought with quite a bit of certainty that my baby would spend Thanksgiving in the NICU and MAYBE be home for Christmas. Maybe it was because my second typical child surprised us with a short NICU stay, or maybe it was because of all of the stories I read on babycenter.com’s Down syndrome support page. I also assumed breastfeeding would take months to figure out, that the baby would be tube fed, and weight gain would be an issue.  Although it happens to some, none of that happened for us and I’m finding out that it doesn’t happen for many.

3. Other stuff may happen. – Despite the fact that we didn’t endure any major Down syndrome-typical health issues at birth, Geneva did catch a cold at 2 weeks and presented with some strange breathing habits that sent her to the hospital for an overnight stay. But this may not have gone any differently if she was a newborn with 46 chromosomes instead of 47. Overall, however, it seems that trips to the ER are more common for children with Down syndrome, so that was our first but probably not our last.  In fact, our roommate in the hospital was a 3-year-old with Down syndrome who had numerous stays already under her belt, including one only 2 weeks prior.

4. The meaning of “one day at a time” and that worrying about the future is pointless for now.

5. The little things are less annoying. – I don’t mind changing a poopy diaper two minutes after I just changed it. These things were somewhat annoying when I had my other two babies, but this time it feels different because thank goodness she’s pooping. Babies with Down syndrome can have numerous digestive issues, and we may run into them in the future, but for now she poops regularly and I’m grateful for that. The same goes for getting up in the middle of the night to feed.

6. I can say no. – My baby can’t speak for herself and it’s my responsibility to protect her. With her being so young and it being cold and flu season I am responsible for protecting her. If people ask to hold her, and people have, I say no. If people want to come and visit, and people have asked, I’ve said no. This is what I’m comfortable with for now.

7. I look at her and have difficulty picturing her future. – First of all, I never spent time looking at my other newborns and thinking about their future, but with this child there already as so many theories about what her future will look like, so maybe that’s why I think more about it than with my other children.  Looking at her now and seeing that she’s just like any newborn, I find it hard to imagine that she won’t be typical and that she may be delayed verbally and take longer than usual to take her first steps among other things.  It’s hard to imagine that some people will label her “retarded”.

8. I can’t believe how much she looks like her other two sisters. – I guess that’s why they say that children with Down syndrome are “more alike than different”.

9.  As Dr. Skotko at the Mass General Down Syndrome Clinic advised me, focus on the 46 chromosomes and not the extra one.

10.  Things are OK.

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8 thoughts on “What I’ve Learned So Far in the First Six Weeks About Having a Baby with Down Syndrome

  1. This is wonderful! Certainly this list will be extremely helpful for others wondering how those first 6 weeks can go. Mine were about the same–no big health issues, no NICU stay. It’s interesting how you describe picturing the future. I find myself picturing my future kids as imaginary, like how I did before they were born, and have to remind myself to picture my *actual* kids in the future. You don’t know what will happen with any of them. They are all a blank slate. I look forward to reading more about your journey. Your little girl is beautiful!

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  2. Beautiful. It took me a lot longer than 6 weeks to get to where you are now. I was consumed with number 7, but don’t be. You’ll evolve together and your baby will exceed your expectations time and time again and eventually you will forget the rule books and the text books. It’s a shame our children have to be diagnosed in a way. As at the end of the day they are just individuals. Like all of us. Lovely post, thank you x

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